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Thanks for the replies. It is so nice to have a support community like Cavalier Talk. It certainly eases the pain a bit. Bev – your statements about Riley on prednisone give me so much hope. I really pray that Butters can have a similar successful tolerance. Rod—Thanks for the additional information. I have found those resources to be very useful. Melissa – it warms my heart that you and Mr. Monster enjoy Butters’ stories and photos. It is fun to share his adventures with you

Overall, I feel everything went pretty well today. I am really thankful to have a vet whom listens and values my concerns. Last night, she had contacted some specialist colleagues and dug further into her literature after hours. She came to the same conclusion as I, and also strongly feels that Butters fits the clinical picture of masticatory muscle myositis (to my surprise when I walked into the office, that was the first thing she mentioned before I could bring it up!). Before Butters’ work-up started this morning, she and I had a chance to discuss the literature and some of the revisions in his planned work-up for the day.

Butters received numerous blood tests, including a CK level and the 2M antibody test applicable to MMM, as well as other tests intended to rule-out tick-borne diseases and other medical conditions. He received a chest and head X-ray, both of which the radiologist read as normal including no signs of abscesses, tumors, or tooth/jawbone problems. Butters ended up not receiving an endoscopy (his mouth opened only 1.5 inches under anesthesia, and the vet agreed that forced opening of the jaw would potentially be harmful). However, a thorough mouth exam under sedation was performed instead, and he did not have any foreign bodies or other observable problems. The vet was able to watch him swallow, which also was helpful information to show that those muscle groups were working.

The CK and 2M tests had to be sent out (will take about a week for results), but his blood cells, electrolytes, liver enzymes, and kidneys all looked good on the blood tests. Since there is such a high suspicion at this point for MMM, Butters was started on Prednisone 10mg daily, which will be continued for at least 3-4 weeks. He will then be reevaluated (unless there is a problem before) to see the effectiveness of his treatment, and may be slowly tapered from there.

My husband and I feel very fortunate that we at least had him checked out while he still has some intact jaw function. Based on the progression of Butters’ symptoms, the vet feels that he likely has the chronic form of MMM. Looking back at his photos, I can see some signs of atrophy all the way back to around 7 months old. The vet reinforced that in the chronic form, it can be less responsive to therapy because the muscles can become completely fibrosed (full of scar tissue). However, she is hopeful that his function will improve with therapy. Apparently, there are many dogs that present at a point where they have lost a great deal of weight and have little or no function of their jaws. Some require tube feeding. Their fibrosis is likely more extensive. At this point, Butters can still continue on his present diet, which he is able to tolerate although with some difficulty. He can still drink water on his own, but it takes him a long time and we will keep close eye on him. We will just have to wait and see how he responds…

We have had a couple of owners with this on the board here over the years. I've also talked about this in the past with neurologist Dr Clare Rusbridge over in the UK. She and some others have said they tend to only see such early presentation of this problem in cavaliers. Steroids are really the only option and without giving them, I understand most dogs will eventually die of this or live a very difficult life, as their jaws lock. My understanding is the earlier steroids are started the better and that for some dogs, once a cycle of them is done, that's it -- the dog does not remain on them permanently. I understand that is in contrast to the other type which your vet first suggested -- which has to be managed over a lifetime. I had friends with a german shepherd with that. This is just off the top of my head from discussions some time past so don't take that as gospel. Hopefully Butters doesn't have a chronic case needing longterm treatment. I do know some cavaliers have definitely improved quite a bit after steroids were started -- so we all will have this hope for Butters! I've come across those cases from owners on other lists many years back with young dogs treated for this. So they are personal, positive stories.

Steroids affect different dogs (and people!)in different ways. They are a 'miracle drug' but with potentially serious side effects. The serious side effects almost always come from chronic long term use -- and still are not a certainty but a possibility. Often steroids are the only, or the best, option. Often the alternative is a hideous quality of life, the risk of death, or the risk of very serious complications if NOT used. I can testify to this because over the past two years, I fell into the first and last categories -- so have a respect for steroids when used correctly and when needed, and also -- had no side effects. And will be going off them very soon.

There are two concerns with the use of steroids in vet medicine, from my perspective. One is that vets and specialists overuse them because they bring swift results, which makes owners happy and/or saves more involved investigation and a more nuanced treatment programme. The other is that owners are incorrectly fearful of using steroids when they are truly not only the best option but may be the only lifesaving option or the one that will quickly bring the fastest pain relief to a very painful dog.

In general: fast tapers of steroids (start high, quickly dropping dose, typical for injury) for acute pain rarely have many side effects and most are trivial and pass quickly. Longer term treatment at low doses may or may not have side effects. Long or medium term treatment at higher doses is the higher risk category for side effects with weight gain being one but also potentially diabetes and some other serious problems. Over a dog's shorter lifespan (compared to a human on this drug) there may never be significant side effects. For some dogs, steroids at higher or medium doses may be the only option. So: using steroids is not a blanket evil or negative. Nor should it be a casual choice. It's best to understand how they will be used, for how long, and ask about options and possible side effects. I would never advise anyone to abandon steroids on the basis of feeling fearful of them. Many of us would like other options (for ourselves or our dogs) but for many of us there are few other options and some of the other options have their own problems.

It sounds like your vet is doing very thorough research into this. Rod and Pat have given some good info/links.

Thanks for your comments, Karlin. Your feedback about prednisone and MMM were especially helpful, in addition to the great advice from other posters.

As an update, Butters has had significant improvement since starting the prednisone last week. He has been able to open his mouth a little more each day, and his eating and drinking have significantly improved during this time. Now he is able to chew his kibble again! He does appear to have a little more atrophy of his jaw muscles since starting, but we were told that may happen. However, the key thing is that his functioning has improved greatly, which gives us much hope regarding a positive prognosis.

In terms of side effects from the prednisone, the only really notable one thus far is nausea, particularly in the morning. He still eats like a champ, but will have some drooling and retching after eating breakfast. He has only vomited once, but my husband and I think that was most likely due to us giving him his monthly heart worm treatment in the midst of him already feeling sick from the prednisone (the heart worm treatment tends to give him the same nausea symptoms on its own). At this point, he is not drinking or urinating more than usual or exhibiting any other problematic symptoms. He otherwise is his happy, loving self.

The following are a couple photos that I took with my phone when he returned home from the vet. It gives an idea of his signs of atrophy, which my husband and I did not pick up on prior to his diagnosis. Maybe it will help someone else in the future.

Our vet confirmed today... elevated CK and 2M antibody consistent with Masticatory Muscle Myositis. I feel relieved to know that we have the correct diagnosis, and that he is getting the correct treatment.

Sounds like you have found yourself an amazing vet!!! I'm so glad to hear Butters is doing better already and that you have an answer it is MMM. I prey he only gets better and the bit of yucky tummy goes away soon.

Melissa
"If you don't own a dog, at least one, there is not necessarily anything wrong with you, but there may be something wrong with your life."
-Roger Caras

Hi Cindy,
I never noticed the atrophy until my vet pointed it out, and it is pretty hard to tell unless you are specifically looking for it. The second picture in my earlier post shows his bony cheekbone, which is a result of muscle atrophy around the jaw. It is easier to tell in person, because you can feel when you pet him that there really isn't much muscle above and below the cheekbone. The longer hair of the cavaliers makes it more difficult to see than in other dogs, like labs. Looking back at his old pictures, you can see how his face went from having a flat profile (no cheekbones sticking out) to what it is now. Still, it is hard to tell unless you are looking specifically at the cheekbone area

He, of course, is still my beautiful boy and always will be. None of our friends notice any difference, and always comment on how beautiful and loving he is. He has been doing so well with the prednisone, and we are heading into the 3rd week Yesterday, he picked up a bone from his dog bed for the first time in months. He is also now chewing his kibble instead of simply swallowing it whole. Our vet increased the prednisone to 10mg twice a day (instead of once per day) last week, after reading that this level might be more effective in the long term at fully stopping the disease process to help preserve the muscle he has left and prevent a relapse. He is continuing to be a bit nauseous, but that at least has not gotten worse with the change in dose. We will have his CK level (marker for muscle breakdown) checked in another couple weeks to see if the blood tests agree that he is responding well. But, the key thing that makes my vet, my husband, and I feel really great is his tremendous functional improvement. I am glad we caught it in time, even though it took us a little while to realize what was going on.

I'm so glad Butters is responding so well. The photo with the roses is lovely (even if the other one may mean more to you - yay, he's getting back to normal!) - think you should offer it to Cavalier Matters for a card! Or put it in for next year's calendar.